Not Asking "Why" Enough?

Discussion in 'General Parenting' started by Stella Johnson, Sep 22, 2007.

  1. Stella Johnson

    Stella Johnson Active Member

    SO and I couldn't find anything else to watch one day a few weeks ago. We ended up watching Discovery Health. There was a show about a little girl who started having unexplained seizures and behavior problems about the same age as difficult child did. Age 3.

    Her parents took her to numerous docs including neurologists. They all said it was a seizure disorder. She had grand mal, temporal lobe and petit mal seizures just like my difficult child. She also had behavior problems and learning disabilities.

    All of the docs wanted her on Depakote and one other drug that I can't remember the name of at the moment.

    Her parents weren't satisfied with just knowing she had seizures. They wanted to know the cause. When difficult child started having these I searched the net and basicly they just said it's her brain mulfunctioning and there is no real "cause". This girl's parents found a study in Europe for kids with seizures. They were testing to see if it could be food allergies causing this.

    Turns out the girl has celiac disease. The wheat gluten was causing the seizures. This was two years ago. The immediately took the girl off all wheat gluten. She no longer has seizures and within that year she had caught up with her peers academically.

    To test for Celiac they first do blood work from what I understand. If she tests positive for the antibodies they have to put her out and use a scope to look at her intestines. I'm not very hip on having her put to sleep at such a young age though. I'm thinking of just doing the blood test and trying the diet first.

    I wish I had asked "why" more often. I think I was so beaten down with all of difficult child's problems that I would tried ANYTHING and didn't ask more questions.

    The Depakote has worked wonderfully for difficult child. She has been stable for a very long time now. I just worry about the long term effects of having her on this. The cognitive dulling doesn't help with her learning disabilities either.

    difficult child's neuro mentioned at our last visit that we could try weaning difficult child off the medications if I wanted to. I was afraid to since school was about to start. The beginning of any change like school is usually pretty tough.

    I'm going to make a neuro appointment for difficult child to discuss weaning off the medications and the celiac. What do you guys think?

  2. busywend

    busywend Well-Known Member

    Did you see 20/20 last night? Jenny McCarthy's little boy has autism. She tried the gluten free diet and he has improved so much he spoke his first full sentence. She was amazed at the progress. I have heard alot about celiac's lately. You might want to check out the Natural Treatment forum for more info.
  3. totoro

    totoro Mom? What's a GFG?

    I would think it couldn't hurt to look into??? Even watching the 20/20 segment last night was amazing. I have just heard the people who are anti-medication get on their soap boxes and rip those of us who "choose" to medicate our children apart... it rips my heart out! As if?!?!? I would change K or N's diet in a heart beat if it would make a difference!!!

    We don't use dyes or processed foods and only eat "fast food" if there is absolutely no other option. It is difficult even doing this, I have looked into the Gluten/Casein Free diet... just to see if it would/could help? It just seems so daunting... but I imagine it is like anything, you would get used to it and it is a lifestyle change.

    When K was in the psychiatric hospital, it was really hard, they had junk food everyday, for graduation parties. They kind of made me feel bad when I said she didn't eat certain foods. I relented to help her feel part of the group... I can't imagine if it was a GCF diet!!!

    Good luck and let us know
  4. Stella Johnson

    Stella Johnson Active Member

    I missed the show last night. Hopefully I can find a rerun of it sometime. I'll check out the Natural Treatments forum. I haven't been in there much.

    I would never be one of the anti medication people. It has helped my difficult child greatly and not everyone can just change their diet and find a miraculous cure. I wish it worked that way but as we all know, it doesn't.
    I have tried to buy less junk and add more fresh foods to our diet. Hard when you have a kid as picky as mine.

  5. flutterbee

    flutterbee Guest

    We can 'what if' ourselves to death. I think we all do the best we can with what we know at the time. When our difficult child's are at crisis level, it's hard to think much further than just getting through the day.

    Heck, if the doctor's don't ask why how can we fault ourselves? It's trial by fire and there is so much to take in at once. We just muddle through the best we can and we depend on the professionals to give us the information we need.

    If your difficult child tests positive for celiac's, I'd say go for it. It certainly can't hurt.
  6. Josie

    Josie Active Member

    I would do the blood test and then, no matter what it says, try the diet, at least gluten free and then think about adding casein free. The blood tests and even the endoscopy do not always detect a gluten intolerance. Celiac disease by definition includes damage to the intestine but it is possible gluten is causing her problems even if there is no intestinal damage. There is a known link between neurological problems and gluten.

    My 2 daughters and I are all girlfriend/CF and have been for about 1 1/2 years. One daughter had the blood tests several times and they were always negative. I did an alternative test on my own for her and it showed gluten intolerance. So then I tested former difficult child and myself. We were positive also.

    I got on the diet thinking I would do it around my kids and eat whatever I wanted when I was out. I immediately saw a difference in how I felt. I thought I had ADD, and an auditory processing disorder. I was also on an a/d and always tired and irritable. Within 2 days, I could tell I would never eat gluten again on purpose. I'm off my a/d and all of those problems went away. Also I noticed that I had a brain fog that lifted when I stopped eating gluten.

    Former difficult child had a diagnosis of ODD and Depresssion. She was on 20 mg of Lexapro and we were thinking of adding Seroquel or a mood stabilizer. She was still out of control. Instead, we started the girlfriend/CF diet and she is now down to 2.5 mg of Lexapro and doing great. We have tapered her off very slowly but we are planning on getting rid of the last bit starting in Oct. The only time she acts like that now is when she has some gluten or some milk.

    Based on my experience with myself and my kids, I really believe a lot of kids with behaviour or learning problems have a gluten intolerance. Even some of the celiac experts think that 25% of the general population has gluten intolerance, separate from celiac disease. Celiac disease is thought to affect about 1% of the population with 97% of them undiagnosed.

    I make sure I send my kids with lots of good girlfriend/CF food. Their friends like my cooking. Yes, they are different from everyone else, but difficult child was different before, too, when she would act the way she did.

    An excellent source of information about testing and following the girlfriend diet is A lot of celiacs are also casein intolerant so there is information about that, too.

  7. TerryJ2

    TerryJ2 Well-Known Member

    Thank you.
    And good luck!
  8. Josie

    Josie Active Member

    I would talk to the neurologist about it but I would still try it even if he doesn't think it will help. Doctors seem to be skeptical about gluten causing problems and it can't hurt to try.
  9. tinamarie1

    tinamarie1 Member

    I saw that discovery health show too! I couldn't believe it was gluten that was causing her all those problems! But I was so glad they found out what it was and she is doing better.
    It really makes you wonder if there is not some other underlying things going on with our kids that docs just don't look into, maybe they think automatically that it is just easier to medicate them than to go through all the steps of testing for these things. My son also has a mild seizure disorder and has been diagnosis with adhd and has alot of problems with reading comprehension.
    something to think about...
    I saw Jenny McCarthy and Holly Robinson Pete on Oprah and was so thrilled to see the 2 of them coming forward and bringing awareness to aspergers. I think at one point, Holly said that she had faced some tough times with her family when they found out she was coming forward with her sons story. But she felt so compelled to reach out to other moms and dads, that she knew she had to do it. I really applaud them both. They are warrior moms!
  10. totoro

    totoro Mom? What's a GFG?

    Stella I hope you don't think I was implying that you would be that way!!! I was saying that it is so hard to do one thing and then to add another, like a diet change... I was thinking the soapboxers would be there waiting in the wings to jump down our throats with the "See if you had only done this from the start!"

    "We have been telling all of you drug pushers for years it is all just your diets!", I know it can be partly for some of our kids... but either way. I just hate when it turns into a battle over all of that, I live in a community that is very anti-immunization and medications.

    Like any of us wouldn't want any answer for them?
  11. totoro

    totoro Mom? What's a GFG?

    Thanks Fairlyoddparent!!! I want to try it... It is just the leap I think. We are pretty close.
  12. Josie

    Josie Active Member

    It took me 7 years from the time I suspected gluten was a problem for easy child's tummy troubles to fully believe she needed to be strictly gluten free. So I can't be critical of others for not trying it. During that time, I read about how it could cause behaviour problems but didn't really believe it would help difficult child. And it is hard to think about at first. But for difficult child and me, it has been the solution.

    easy child is still struggling with Obsessive Compulsive Disorder (OCD) and we are trying to find a medication that will work for her. So I can't say I believe it will cure everything.

    From what I read, some people with celiac who are gluten free still have seizures but some people don't.